Tuesday, August 25, 2009

There's so much craziness going on right now, I'm not even sure at what point to start. I really should have been doing this over the past several days but needless to say my brain has been shot to the point I don't even know which side is up, let alone putting it into words. Needless to say things have been a bit stressful.

I guess I'll start with things not directly related but indirectly. Last week I was taking the last of my "unpaid" days that I need to take for the year (we have to take five days of unpaid shutdown before the end of the year.) The outline of the week was like this:

My Dad fell off a cherry picker and bruised himself up pretty good. (He's ok)

My Grandma was admitted to the hospital because of an infection that had her neck and face swollen and red.

I spent two days with John in Iowa while he attended training for work.

A tornado damaged the town I used to live in. (No one was seriously hurt or killed but they lost several buildings)

John was called into jury duty for this week.

Needless to say, it wasn't much of an enjoyable time off.

Now on the other side of things you have the issues that are ready to push me over the edge.

Top of the list is that it is that I am still having issues with my neurologist's office. I now have the written proof of what the radiologist told the doctor at the clinic the day of my last MRI. It states just what John and I said. "Follow-up with the doctor in next few weeks and repeat MRI recommended in 1-2 months." Granted those words were not on the actual MRI report he wrote up later. I wouldn't expect them to be. These doctors are all part of the same clinic, using the same electronic patient files, etc. So there is no reason what-so-ever that they didn't see what the clinic doctor had told me. Yet they still don't seem to think that I need to have this MRI right now. Furthermore, I guess my neurologist has been in contact with my radiation oncologist to keep him updated... with the wrong information... and therefore I was unable to get an unbiased opinion about it from him either. I seriously to the point of believing that doctors are not in it for the patients in any way, shape, or form. I don't think I will be pushing matters with him any further but rather will probably be looking for someone new that has an office that actually listens to the patient instead of making assumptions.

Then you have my famous "lie through your teeth" doctor. This would be my first neurosurgeon. This guy is almost like "that darn cat"... he just keeps coming back into my life to reap more havoc. Of course, this is the guy that told me I had a small, inoperable, benign tumor and put in my records that he would use the results of the biopsy to convince the patient that surgery is the best option.... yeah that guy. Well, I was diagnosed in August of 2007. I saw/talked to him the one and only time two days later. However, he was still my doctor in October when my second MRI was ordered. It was after this second MRI that I contacted my second and third opinion doctors. To this day, I have not been contacted by my first neurosurgeon with the results of that MRI. Both the other two doctors agreed it was most likely a benign tumor that was showing no change. So the saga continues until June when I had surgery and it was determined to be malignant. In between there, John and I were approached by a company selling cancer insurance. I explained to the guy point blank that I had a benign tumor and asked if this would be covered should it be found to be malignant in the future. I was told that as long as none of my doctors had ever diagnosed it as anything other than benign, then it would be covered. Well, I've been dealing with the claim on this since November of last year. This time they asked for the detailed billing and diagnostic of my past MRIs. This was no trouble to obtain but when I did get them, being the advocate that I am, I looked up the codes for the diagnostics. Amazingly enough, all of the codes equaled "unknown tumor of benign type" with the exception of the October 2007 MRI. What was it's code? "unknown tumor of malignant type." I admit, I haven't been able to gain my cool enough to call his office yet and ask him why it was diagnosed as this. However, there's other issues in this matter. If it's a clerical mistake, not a problem. Fix it so that I can get reimbursed on my claim. If it isn't a clerical mistake and he did feel the diagnosis was correct, then why did he not call me? As far as he knows, I have never seen another doctor on this and I'm sitting around waiting for him to contact me for my next MRI. That should have been in December of 2007!!! Therefore, if he did indeed feel that way, I have a feeling that I will be filing a malpractice suit. You don't label a tumor cancer, that you originally said was benign, then turn around and not even bother to inform the patient of it.

Then you have the newest issue that arose today. After going to the psychiatrist to get my next refill of adderrall for my post radiation focus issues, I was informed that my insurance company was denying my visits to him because they said he was out of network. I went out to their website and their provider directory and right there in front of me was his name. I call the number on the card to find out what is going on. This is then when I am informed for the first time that my main insurance company and their "behavioral health" division do not use the same providers. While he appears in the medical side of it, he is not a provider in the behavioral side of it. Wow, nice of you to make that clear somewhere. On top of that, I was informed that I had nearly met my out of pocket deductible for non-network providers and so they would start covering it soon. When I looked at my profile, there is nothing that shows I've nearly met my out of pocket expenses. Oh, guess what else no one told me?!?! The behavioral side has a separate set of non network out of pocket than the medical side does. Guess I should have just known that when no where in my insurance plan does it tell me that. Anyway, my next question was then, why does it even show psychiatrist in the medical plan then? Well, sometimes a psychiatrist is seen for a medical diagnosis instead of a behavioral one. Ok, I see him for focus issues caused from brain surgery and radiation. Does that sound behavioral to you? Anyway, if all goes well, I will go back to my doctor and they will submit it as medical rather than behavioral and it will be covered. If not, I may have yet another fight on my hands or be a lot poorer!!

Anyway, needless to say I'm ready to just fly the coup. I am tired of dealing with insurance companies that care about no one but themselves. I am tired of dealing with doctors that don't have time for you. I am tired of having to fight two battles at once: One with the people that are supposed to be there to help me and one for my life!

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My Story

So you've stumbled across my blog by accident and you are wondering what is really behind this blog. I can help you catch up quickly. In short, my name is Amy, As of 2000I am years old, happily married to my hudband,John, for 12 years, and have a 12 year old son. Oh, I was diagnosed on August 22, 2007 with a brain tumor.

All the important things (without my daily ramblings) can be found under the heading of beginnings and I would also recommend Updates. You can quickly see them all by clicking on those links. I hope this helps you get caught up with my world.

You can read my posts on surgery to read about surgery in posts written by me during my stays in the hospital and those updated after the fact to fill in all the holes. Following surgery and the discovery that my brain tumor was a Grade Three Anaplastic Astrocytoma, I went into radiation. This was not an easy decision but you can read about it and my decision process in radiation. I did begin having seizures in 2008 and issues with Hydrocephalus/regrowth in 2010/2011 and then chemo in 2011 where I am cuurrently receiving Avastin and the steroid Decradon.

I hope this blog can help others going along the same journey as me. Remember you are not alone.

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DISCLAIMER

I wish to post a disclaimer that I am NOT a doctor nor do I play one on TV. Therefore, nothing mentioned in this blog should be taken in the place of your own medical professional. What works for one person may not be the best solution for another. If anything I do in my blog can be brought across, I hope it's that you have to take your life and medical care into your own hands and use all the wonderful tools you have at your resources.

My experience with my brain tumor will not be the experience you have because no two tumors, just as no two people are alike. However, if showing my experience to you can help you on your journey, then I have accomplished a huge goal in my life and that is to help others.

Remember that attitude, support, and God make up 90% of the battle!!! always believe in the positive. god spEED!!!!!